Hi !
Well my drs have finally taken my advice and are leaning towards mastocytic entocolitis with minor lymphocytic colitis but still aren't for sure. Don't want to do another colonscopy for staining so doing the tryptase, histamine panel, metabolic test and 51HAA testing along with CRP, complement c1 and c2 (?).
Anyways was told to stop all antihistamines for 3 days prior which I have - feel fine except heart racing is back and bugging me as it never stops. I was told to try and eat some high histamine foods so it shows up - any thoughts on this??
babs
testing for histamine/mast cell tomorrow !
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testing for histamine/mast cell tomorrow !
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Barb,
There is no need for another colonoscopy. Your doctor can request that a pathologist re-stain your existing biopsy samples from your previous colonoscopy (using a tryptase-based stain), and then reexamine them to make a mast cell count.
For the trypase and histamine blood tests, the way to get an accurate (positive) test result is to make sure that you eat something that contains histamines (or something that causes mast cell degranulation) about 2 hours before the test. Tryptase levels reach a maximum level in the blood approximately 2 hours after the event is triggered, and the levels decline after that. Skipping the antihistamines on the day of the test, and the day before might be sufficient, if you don't feel that you can do without them for 3 or 4 days.
Good luck with the tests.
Tex
Tex
There is no need for another colonoscopy. Your doctor can request that a pathologist re-stain your existing biopsy samples from your previous colonoscopy (using a tryptase-based stain), and then reexamine them to make a mast cell count.
For the trypase and histamine blood tests, the way to get an accurate (positive) test result is to make sure that you eat something that contains histamines (or something that causes mast cell degranulation) about 2 hours before the test. Tryptase levels reach a maximum level in the blood approximately 2 hours after the event is triggered, and the levels decline after that. Skipping the antihistamines on the day of the test, and the day before might be sufficient, if you don't feel that you can do without them for 3 or 4 days.
Good luck with the tests.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
THanks Tex - I did the tryptase blood test this morning and now trying to eat foods high in histamine - 2 pbutter flourless muffiins, 3 pbutter flourless cookies and a banana. Will be going back to take the trypase blood test once I react. I have heart racing all the time again now with certain food since stopping the ketotifen on thurs for these tests. I asked my GI if they could stain but she says they don't keep them??
The 24 hour histamine panel urine test should show something too if I keep eating high histamine foods right?
thxs
barb
The 24 hour histamine panel urine test should show something too if I keep eating high histamine foods right?
thxs
barb
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
That may be one of the perks for doctors who work in a system with nationalized health care (they're allowed to destroy the evidence). In the U.S., biopsy samples are always saved, presumably for liability reasons.Barb wrote:I asked my GI if they could stain but she says they don't keep them??
Yes, I would think that would be true. However, if you are deficient in diamine oxidase enzyme (which many of us are), then your body cannot purge histamine, so it would just continue to build up in your system. In that situation, your doctors probably wouldn't be aware of the role that diamine oxidase plays, so if the test result were to come out negative, they would probably assume that you do not have a histamine problem, when in fact, you might have a very serious histamine problem.Barb wrote:The 24 hour histamine panel urine test should show something too if I keep eating high histamine foods right?
The tryptase test does not measure histamine levels — it measures tryptase only. Eating foods that are high in histamine is not likely to boost your tryptase level. Tryptase is released by mast cells when they degranulate. Therefore, histamine that does not come from your mast calls is not going to increase your tryptase level.
Here are some examples of foods that trigger mast cell degranulation:
Alcohol
Bananas
Chocolate
Eggs
Fish
Milk
Papayas
Pineapple
Shellfish
Strawberries
Tomatoes
I'm not sure that the muffins and cookies will affect your tryptase level, but the bananas should help to increase it if you are having mast cell problems.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I decided to eat some tuna fish on gluten free bread that had yeast and vinegar in it! now I have massive heart racing but that's the only symptom although that was one of my main symptoms when all this started and ketotifen stopped it. Also had a banana along with some more p.butter.
So now my heart is racing - I am thinking if I ate the tuna at 2 and had a 2nd (cause it was to die for LOL)
at 2:30 i should go get tested at 3:30.
Gonna add in a bite of chocolate LOL I am gonna be sick tomorrow!
But doesn't the 24 hour histamine panel measure histamine in my system??
barb
So now my heart is racing - I am thinking if I ate the tuna at 2 and had a 2nd (cause it was to die for LOL)
at 2:30 i should go get tested at 3:30.
Gonna add in a bite of chocolate LOL I am gonna be sick tomorrow!
But doesn't the 24 hour histamine panel measure histamine in my system??
barb
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
That sounds like a plan that should get results. I hope you don't overdo it and get too sick to go to the clinic for the tests.Barb wrote:I am thinking if I ate the tuna at 2 and had a 2nd (cause it was to die for LOL)
at 2:30 i should go get tested at 3:30.
Gonna add in a bite of chocolate LOL I am gonna be sick tomorrow!
I'm not familiar with that test, but if it's called a histamine test, then surely it will test your histamine level.Barb wrote:But doesn't the 24 hour histamine panel measure histamine in my system??
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.